Autism FAQ s. Frequently Asked Questions about Autism Spectrum Disorder (ASD)

Transcription

1 Such About a great Diagnosis resource, I don t know what I would have done without 4 it! Autism FAQ s Frequently Asked Questions about Autism Spectrum Disorder (ASD) A helpful guide to information and resources for parents and caregivers of children on the Autism Spectrum

2 8 Our Mission: To improve the quality of life of young Children with Autism Spectrum Disorders (ASD) and their families. EARLY works with the programs of the University of Oregon, Center for Excellence in Developmental Disabilities (UCEDD) to provide evidence-based research, training, and services to young children with ASD, their families, and the community. uoucedd.org

3 What s Inside: Page Topic 3 About Diagnosis 12 Treatment Tips 16 Supporting Social Development 19 Where to Find Help

4 3 8 About Diagnosis What are Autism Spectrum Disorders? Autism Spectrum Disorders (ASD) are neurobiological disorders that lead to specific difficulties involving social communication, repetitive behaviors and sensory processing problems. All children with ASD struggle with social interaction, verbal and nonverbal communication. They may also have repetitive behaviors, such as spinning or rocking, or repetitive interests, such as dinosaurs, flags or other topics. ASD occurs in all racial, ethnic and social groups. Symptoms can range from mild to severe. uoucedd.org

5 About Diagnosis 4 Common Signs of Autism Children with autism exhibit a pattern of symptoms involving social communication, sensory processing and repetitive behaviors. When compared to other young children ages 6 to 12 months, a child might: Avoid eye contact. Show limited facial expressions and may not smile during social interaction. Be delayed in learning to babble. Play with toys in limited ways (for example they may only spin or drop their toys). Have muscle tension, floppy muscle tone or motor delays. Toddlers ages 12 to 30 months might show some of the following signs: May not point at objects to show interest (for example not pointing at a bug on the ground).

6 5 8 About Diagnosis Common signs continued: May not look at objects when another person points at them. May respond to environmental sounds, but not when their name is called. Rarely smiles in social situations. Shows limited interest in making sounds and gestures to communicate. Plays with toys in limited ways. Tenses their body in unusual ways. Demonstrates poor motor coordination or delays. Repeats motor actions over and over again (flaps hands, pace, spin, rock). uoucedd.org

7 About Diagnosis 6 Common signs continued: May lose skills they once had (for example, stop saying words they previously used). May struggle to coordinate facial expressions, body language and gestures during communication. Other symptoms include the following: May repeat or echo words or phrases said to them, or from TV and movies. May have trouble interacting with peers. May not play pretend games (for example, not pretend to cuddle a doll or stuffed toy).

8 7 8 About Diagnosis Common signs continued: May have trouble adjusting to a change in routine. May have unusual or strong reactions to the way things smell, taste, look, feel, or sound (for example, they may scream in response to loud sounds, prefer specific clothing textures, under-respond to pain). May struggle with turn taking or engaging in conversation. May obsess on unusual interests such as spinning toys, vacuum cleaners, dropping things. uoucedd.org

9 About Diagnosis 8 How do I know if my child is showing signs of autism? Take Action! Don t take a wait and see approach. Talk to your child s doctor or health care provider. Your child s overall development can be screened and your doctor or health care provider can assist you with next steps. Ask your child s physician whether your child should be referred to a specialist or team of specialists who diagnose autism. Call your local early intervention provider and request a screening for developmental problems including autism. This service is free to you. Each county in Oregon has its own Early Intervention Provider that offers early developmental screening and follow up services as needed. To find your local Oregon provider, ask you healthcare provider or look online. (See the Finding Treatment section on page 23.)

10 9 8 About Diagnosis My child was just diagnosed with autism, what should I do? Discuss your concerns with your child s physician and ask for any needed referrals. Consider getting both a medical diagnosis and an educational eligibility. Your child would benefit from both a health plan and an educational plan. Seek help through your early intervention provider to develop a home-based treatment program together with you and your child. Look for Parent Support groups in your area. Parents of children with autism are good sources of information. Connecting with other parents can help you learn that you are not alone. Check out the Autism Speaks 100 day kit. This booklet was written by parents and professionals to help families plan. (See the Finding Treatment section on page 23.) uoucedd.org

11 About Diagnosis 10 What causes autism? Scientists have learned that autism is probably caused by several factors, most notably genetics. Many genetic studies are underway to learn more about their role in causing autism. A few studies also indicate that exposure to pesticides and air pollution may increase the risk. The age of the parent may also raise the risk in some cases. If you are concerned about the cause of your child s autism, it is important to get accurate information from reliable sources. Here are some places to start learning more: National Autism Association Autism Speaks Autism Society

12 11 8 About Diagnosis What is the difference between eligibility and medical diagnosis? There are two ways that professionals identify autism in Oregon. Educational eligibility and medical diagnosis are both beneficial. Eligibility is for educational services. Evaluation and services from your Early Intervention Services provider are available to all families at no cost. The evaluation results in an Individual Family Service Program (IFSP) for children ages birth to five years or an Individual Educational Plan (IEP) for children in kindergarten or above who have delays or disabilities. A medical diagnosis is provided by a medical doctor, psychologist or a specialty team of professionals. Diagnosis may lead to treatment of medical symptoms, and helps identify health problems linked to autism. Diagnosis may also provide access to services such as therapies, case management, Social Security Income and Developmental Disability Services. uoucedd.org

13 Treatment Tips 12 Finding Treatment A variety of treatments are available. The type of treatment will depend on your child s age, specific strengths, weaknesses and needs. Many children need medical treatment for problems such as constipation, picky eating, over-activity or poor attention. Your child s physician may refer you to an occupational therapist for sensory processing difficulties or a speech/language pathologist for treatment of social communication. Consult your child s physician for information and support. For children under age 5 years, your early intervention provider will have more information on educational treatment and services. In Oregon, autism specialists are available to consult about treatment.

14 13 8 Treatment Tips For children over age 5 years your public school will provide educational interventions for learning and behavior in the classroom. Professionals generally recommend use of strategies that are supported by research. Many effective treatments are based on Applied Behavioral Analysis (ABA). Find more information about treatment and parent resource contacts on pages 22 through 26. uoucedd.org

15 Treatment Tips 14 Tips for seeking Treatment Talk to your child s educator or doctor if you are considering a new treatment or therapy. Keep a notebook of health and educational records. The Swindell s Resource Center has a free care notebook to download or receive by mail. Ask your treatment providers about their training and experience: How many children have they treated? How do they provide treatment? Ask about the effectiveness of the program for children who are similar to your child: What changes can I expect with treatment? How does the provider decide whether a treatment is working?

16 15 8 Treatment Tips Be cautious about treatments that: Claim to improve all the symptoms of autism or claim to cure your child. Offer a program that is not specifically designed for your child. Offer intervention that goes against common sense or provides treatment that might cause harm. uoucedd.org

17 Supporting Social Development How can I support my child s social-emotional development? Social-Emotional development is critical for a child s well-being. Social-Emotional means the child s ability to develop healthy relationships, understand and manage emotions, use empathy, and enjoy social interaction. Social-emotional cues can be difficult for children with autism to use and understand so they need chances for extra practice. Children s social and emotional skills improve with development and chances to interact with other children. Things you can do: 1. Find out if social skills are being taught in your child s classroom. Check your child s education plan (IFSP or IEP). 2. Exaggerate your facial expressions and gestures so that your child looks at you. Encourage eye contact during activities your child enjoys such as tickling, chase or playing ball.

18 17 8 Supporting Social Development 3. Pretend-play is especially helpful. Show your child ways to play with cars and trucks while making vehicle noises and driving into a garage. Pretend to feed or dress a doll or stuffed animal, cuddle it and put it to bed. Pretend to feed or dress a doll or stuffed animal, cuddle it and put it to bed. 4. Provide opportunities for your child to ask for things. For example, you can put a favorite toy out of reach so that your child must communicate with you to get the toy. Imitate the sounds or gestures that your child makes to encourage communication. 5. Try play dates with just one other child who shares your child s interests. Supervise their play to give your child support during these activities. Teach your child the words and facial expressions that communicate feelings. uoucedd.org

19 Supporting Social Development For older children you can name their feelings during play or daily routines. When your child plays with you or when you look at books, you can describe the facial expressions and the feelings. Look for teaching moments when your child is engaged with you. 7. Display pictures of emotions in your home and help your child understand them. Try using stories to describe feelings and the situations where sadness, anger and happiness occur. 8. Remember that your child may need more practice to learn and understand social and emotional cues. Most children have IEP or IFSP goals for social emotional development, so check your child s educational documents. Find out what the teacher is doing so you can try the same activities at home.

20 19 8 Where to Find Help Where can I find respite care? Child care? County-based developmental disability programs can help some eligible families to find respite and childcare. The Arc of Lane County offers respite, in home care and family support arclane.org ARCH National Respite Network Searchable database for respite care archrespite.org Autism Speaks State by state resource guide for respite autismspeaks.org Oregon Inclusive Helps with supports and accommodations in child care oregoninclusivecc.org uoucedd.org

21 Where to Find Help 20 Where can I find parent support, training, legal support? Lane County Direction Services and Counseling Parent Support directionservice.org Bridgeway House Services for families in Lane county bridgewayhouse.org Early Childhood Cares, Lane county Early intervention and Early Childhood Special Education Services earlychildhoodcares.uoregon.edu Early Intervention Providers in Oregon Call Or See Find Local Support at asqoregon.com

22 21 8 Where to Find Help Oregon Family Support Network Respite, support groups, advocacy Lane County For Parents ofsn.org State wide directory and parent help warm line Call or search to find resources and supports Call info.org Child Care Central Coordination See a list of providers in your zip code oregonccrr.com Signs of autism Video Glossary Learn about early signs of autism autismspeaks.org Learn the Signs. Act Early Information on early milestones and next steps when you have concerns TTY cdc.gov uoucedd.org

23 Where to Find Help 22 First Signs Information and recommendations for screening firstsigns.org Check Your Child s Development Free online site to screen your child s overall development with an easy online checklist asqoregon.com The American Academy of Pediatrics Milestones, health, tips and tools healthychildren.org OARS - Organization for Autism Research Free online publications and general information researchautism.org Oregon Department of Health and Human Services Overview of autism, symptoms and information TTY oregon.gov

24 23 8 Where to Find Help Autism Speaks Helpful toolkits, information about diagnosis treatment and current research autismspeaks.org Autism Society of Oregon Answers to frequently asked questions from parents Sources for respite, support groups and activities autismsocietyoregon.org My Child was just diagnosed, what should I do? Autism Speaks 100 day kit Free Helps families with the first 100 days after diagnosis Use the kit to map out a plan for your child autismspeaks.org Finding Treatment and Social Emotional Support Organization for Autism Research (OARS) Reliable information on diagnosis, intervention, and family support researchautism.org uoucedd.org

25 Where to Find Help 24 Early Intervention Providers in Oregon Call Or visit asqoregon.com Swindells Resouce Center Call or download to receive a Care Notebook English and Spanish available ext oregon.providence.org Oregon Family to Family Health Information Center Peer Support for families of children with special needs CARD Center for Autism and Related Disorders ABA and services to families impacted by autism Offices in Eugene, Salem, Portland Eugene centerforautism.com portland.centerforautism.com

26 25 8 Where to Find Help Center for Social-Emotional Foundations of Early Learning Family tools - help with challenging behavior csefel.vanderbilt.edu Zero to Three Information on the first three years of life Advocacy and Legal Support FACToregon parent education workshops FACToregon.org Creating Opportunities Program Serves Marion, Polk, Yamhill counties creatingops.org Disability Rights Oregon tools for advocacy and legal support TTY dial 711 droregon.org uoucedd.org

27 Where to Find Help 26 Thank you so much for the information, support and guidance that your team offered to our family. We are very hopeful about our child s ability to learn new skills.

28 Frequently 8 Asked Questions about Autism Spectrum Disorder (ASD) Debra Eisert Ph.D. (541) debrae@uoregon.edu Website: uoucedd.org Wendy Machalicek Ph.D. BCBA-D (541) wmachali@uoregon.edu Website: uoucedd.org Please visit uoucedd.org for more information